Back to the old ways

Firstly I’d like to apologize for not having writing lately on my blog. To be honest, this last month of February has been hectic! Organizing the cancer research outreach day, moving out from my parents’ place -involving the “almost random” unpacking-, I haven’t found much time to dedicate to writing. It’s been crazy, but anyway…

Do you know that typical movie ending scene in which the “bad guy” lies on the ground and, when the “good guy” turns around because thinks he is dead, the former turns his head, gets up and attacks him with a sucker punch unexpectedly? That plot could be perfectly applied to my life. Some months ago, right before Christmas, I was NED -not because of Flanders, but for Not Evidence of Disease -. However, the image diagnosis revealed a couple of spots in one lung, which back then were declared as unspecific. They would have to be controlled carefully in subsequent scans, every two months.

The first medical visit after the treatment was a couple of weeks ago, on Monday, February 26. J.M.L., my oncologist, gave me the worst piece of news that I could ever expect: one of the spots had grown -from 6 to 14 mm- and up to four new ones had appeared. This is a so-called relapse. I call it “throwing cold water on somebody”. What a never-ending marathon… this is turning into an iron-man triathlon 😖

Now that I was starting to resume my life, my routine, to do some sport without having to think about breaking training every 2 weeks, to plan a temporary return to Switzerland in order to finish my Ph.D., etc. All of this will be put on Stand-by, like the famous song by the Spanish rock band Extremoduro.

I had a bunch of sixty-four thousand dollar questions to ask Juan, but many of them had no answer, and the worst of all is that they won’t have it until research advances enough. I felt once again the helplessness of suffering a rare disease. We, the patients, are totally exposed to something on what we lack any kind of control. And that feeds the fears.

It’s like, in reality, I had never been NED. Those spots had appeared between May and December last year, while I was having the consolidation chemo treatment. In other words, either some cells had become refractory -resistant to chemo- and had formed those tumors, or it was radiotherapy and not chemo what killed the principal tumor in the ischion. In order to understand all of this, I’d have to undergo a biopsy of the tumors in my lungs. This option was dropped off quickly since due to their small size, it would be very aggressive: like digging into my lungs. Definitely, we don’t know the reason for such relapse, and unfortunately, it won’t matter, since we don’t know what is the most effective treatment to fight it. So the best that I can do is to keep my head cold and try to pass this accepting stage ASAP.

Dr. J.M.L. proposed me to take part in a clinical trial –rEEcur, for relapsed or refractory patients- that aims to study which of the four second-line chemo treatment combinations is more effective:

  • Topotecan and Cyclophosphamide (TC), or

  • Irinotecan and Temozolomide (IT), or

  • Gemcitabine and Docetaxel (GD), or

  • Ifosfamide (IFOS)

In this trial, as in many other clinical trials, a computer chooses randomly between the four treatment options. I asked my doctor about what would happen if I -hypothetically- decided not to participate in this trial, and he was quite clear about this: they would give me one combination, GD to be more specific, although without any kind of foundation, thoughtlessly. I’ve read about this trial and in September 2017 it had managed to recruit just 182 patients. The ending date is in September 2018 and the target number of patients is 525, so they are quite far yet. It’s insanely difficult to find Ewing’s sarcoma patients and even more relapsed ones to be willing to take part in clinical trials.

The machine has chosen the first of the options: Topotecan and Cyclophosphamide. I’ve also posted in a mail distribution list from ACOR Association of Cancer Online Resources– asking for people having any experience with these drugs. The responses have been very varied, as every personal situation is completely different. Indeed, there isn’t much info concerning this treatment, so I’m not gonna summarize here what I got from ACOR and the Facebook groups. What I really know is that it will last 6 cycles maximum, each one including 5 chemo days in a row as an outpatient every 3 weeks, with scans every second cycle. I’m totally conscious that the situation is serious, even more than what it was the last year, and I’m also aware that in case of relapse the prognosis improves the longer the NED time is. But, as I said to my doctor on Monday morning, I’m not the kind of person that surrenders or runs away. This cancer, a.k.a “the bug” or as Narcos’ characters may say in Colombian Spanish “hijuep**a malparido“, is looking for trouble messing around with me. And, as my friend Cris says, what really counts is how the race ends once you cross the finish line, it doesn’t matter how you get there.

The double marathon has turned into an ironman triathlon. The WOD that I was doing has become a Hero WOD, probably Murph, but wearing a weighted vest. The kyokushin fight that I had just finished is now one more combat to complete the hyakunin kumite, or 100-man kumite. Keep on sending prayers, energy and good vibes, thinking of me, and sending encouraging messages. Perhaps I won’t have time to reply to all of them, but only reading them makes me extremely happy. In the meanwhile, I’ll keep the pace step by step, rep by rep, and tsuki by tsuki, slow but steady. It couldn’t be any other way. Otherwise, it wouldn’t be me.

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2 thoughts on “Back to the old ways

  1. Hi Dani,
    On est avec toi! Les films finissent tjs avec le méchant qui perd.
    Et on va reprendre la route du tour du canton pour te soutenir.
    On t’aime
    Vamos Dani!

    Like

  2. Good luck Dani! 🙂
    You are a fighter and you sure are going to win this race.
    Hugs and more power to you,
    Kavitha
    P.S:We met when you came to ICFO two years ago.

    Like

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